Having ALS-like symptoms and can't get a neurologist referral

Posted by intosomewhere @intosomewhere, 5 days ago

Hello all! I am a 24-year-old male and I am here because of some recently appeared als-like symptoms on me that have been taking me down the anxiety pipe. I would hope to inquire among the professionals / pals who share similar experience in such symptoms. Sorry if the content below is a boring long read.

Started a week ago I suddenly developed a moderate degree of breathing issue and heart beat raised by a lot at time. Meanwhile I noticed my hands and feet would go numb and cold during sleep. I seeked medical attention immediately but after ECG, urine and blood test the family doctor could not find anything. I thought that would be it but no.

What proceeded such symptoms were scary to me. I realized that although after getting up from bed and doing things for a while would make the numbness largely disappear, both my hands and my legs don't work as well as they used to - I have more trouble putting up buttons or tying shoelaces and things feel slightly heavier to me, and I mistype significantly more. My legs feel weirdly heavier and walking brief distance would cause muscle aching on the second day. The numbness of my hands / feet also doesn't truly go away and slightly linger even when I am typing / doing other handworks. Furthermore I also would wake up to my hand having little power to clench fist, although that problem kind of goes away as I get up from bed and do more work.

What scares me even more is that at the same time I began to develop slurred speech. I would slur once maybe every 15-20 words or mispronounce / say the wrong word when doing readings. I also seem to be having swallowing issues where it feels like a small ball is stuck in my throat.

I have done a series of self-testing and it seems I can stretch / bend / swirl fingers just fine. I can stand (briefly) or walk on toes / heels just fine and I still work out just fine. All limb joints display full range of motion but my fingers on both hands still act less flexibly than before and mistype on keyboards happens way more frequently. The family doctor had also done some limited tests on me including walk / turn test, kneejerk and arm strength test. She also inspected my tongue at rest and deemed it not twitching,

All tests results were deemed fine by my Canada-based family doctor's standard and although she said that neurology / als is out of her scope, she still deemed no clinical weakness present and said theres no ample reason for her to refer me to EMG testing units / neurological specialists. I am left here worrying.

I would hope to hear your opinions about my case - is it paranoia on my side? or does it seem like something that deserves my full attention and fear? Sorry if the post reads like a complete waste of your time - but I am so deeply sucked in the ALS symptom spiral that I would kill for some professional / experienced input.

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Zebra | @californiazebra | 3 days ago

Neuro issues are frustrating and scary but it could be so many things including something non-life threatening. Consider multiple sclerosis and myasthenia gravis as possibilities. Without a neuro referral it’s going to be difficult to diagnose. When I was 21, I went to a neurologist complaining of extensive sudden numbness over my whole body. He literally screamed at me and told me I was wasting his time. He sent me for nerve testing simply to prove to me nothing was wrong. The test results were abnormal and now he was nice and interested. I said good-bye to him. Fast forward 25 years and my son had genetic testing for suspected CMT after being told he would be in a wheelchair by 40. Wrong again. It turned out to be HNPP, a rare hereditary neuropathy. Finally explained my issues. That was an unfamiliar disorder when I was tested. Most neurologists and other doctors still haven’t heard of it. We have extreme cases of HNPP with so many quality of life issues but we still live life and it won’t likely shorten our lives. Frustrating and challenging for sure. Lots of weird neuro stuff out there that is not life threatening. Prayers you find answers and it’s nothing as serious as ALS. When I began aspirating everything I tried to eat 9 years ago I was tested for suspected ALS, MS and AG — all negative. Two neurologists concluded it was part of my HNPP. I’m still very limited in what I can safely eat. Prayers for you that you find answers soon.

dlydailyhope | @dlydailyhope | 2 days ago

@intosomewhere
You have very similar symptoms I had/still have. Have you had an accident, fall or injury to your neck at all (while working out/using weights)? I have congenital cervical and lumbar spinal stenosis and was finally diagnosed with cervical spondylitic myelopathy after a long period of decline and misdiagnosis by many doctors. I had a cervical MRI and it showed spinal cord flattening/compression especially at C5-C6 and it caused me swallowing issues (like when drinking a protein drink), speaking/slurring words, arm/hand weakness (handwriting affected and dropping things/arms weak), heavy legs which made walking difficult (felt like I was wearing cement boots) and was losing control of my bladder. I ended up getting ACDF surgery to get pressure off my spinal cord. Some of my symptoms improved. This is an urgent issue to be addressed because spinal cord injury can be permanent so the sooner you get diagnosed, the better. Especially because you are so young.

Jennifer, Volunteer Mentor | @jenniferhunter | 2 days ago

@intosomewhere Hello and welcome to Connect. You have just discovered the power of your mind when embraced by fear, and we all do that. Understanding this will help you learn to get past it. Your mind is just as powerful in overcoming health issues when you believe in positive results and hope. Humans are creatures who will first be alarmed by fears because that is a survival instinct, so let that voice be the reason that you ask questions and keep trying to figure things out instead of believing in having a problem for which there is no supporting evidence. Take notes because sometimes it can take years to figure out why you had a symptom when it isn't crystal clear at the moment.

I should tell you, I once asked the same question about ALS because my pain and numbness issues seemed to be on one side of my body. What I did have that developed over several years was a cervical spine issue caused by a whiplash in a traffic accident, and Thoracic Outlet Syndrome which is a compression problem affecting the nerves and blood vessels that service the arms. I eventually had spine surgery at Mayo, and while I was in the waiting area for a neurology test, I was talking with a patient who had diagnosed ALS. I could see that he had muscles in his arms jumping randomly in different places all the time, so that is what I remember. When you have a physical nerve compression issue, it is usually in a specific place in a reproducible pattern.

The issues that I had were spinal cord compression in my neck, and that made my pains random and they could change to different places in my body. Why? Because the spinal cord floats and moves inside the spinal canal and in shifting position, it can change what part is being touched. I also had TOS which adds heaviness to the arms, numbness and tingling and I would wake up at night with my arm totally numb and dead because of my arm or neck position. TOS can cut off the blood supply and my arms used to get cold and turn blue or purplish and blotchy.

My questions to you would be to ask if you are involved in sports and what sports? Are you doing things that are hard on your body? What do you do for a living? Is it hard physical work? Have you had an injury or accident? Do you have good posture or a slouching posture? If you look at yourself in a mirror standing do your hips and shoulders line up and are level? From a side view, is your shoulder inline with your neck or is it more forward? What are you doing in your work outs? Are you lifting weights and keep trying to increase your lifting ability?